Liam McKnight signed his medical marijuana licence when he was just five years old.

The boy from Constance Bay suffers from Dravet syndrome, a rare and severe form of epilepsy. It can cause nearly constant seizures that last three to four minutes each. His condition led him to miss time during kindergarten.

Liam had 67 seizures the day before starting cannabis oil treatment. The first 10 days he used cannabis oil, he was seizure-free, his mother says.

“He had new words,” said Liam’s mother, Mandy. “He was horseback riding. He was in a boat, he went tubing. He was so happy. We had a little glimpse of what life could be like.”

Now six years old, Liam is registered to start Grade 1 in September at St. Michael school in Fitzroy Harbour, with the help of an educational assistant and full-time nurse.

On Wednesday, he was counting characters in a children’s book from the world of Teletubbies, and seemingly having a pretty good day. “I went to the park,” he said shyly. “I read a book.”

He suffered a small seizure while speaking to the Citizen.

Even though Liam is licensed to use medical marijuana, taking it in extracted oil form violates Health Canada’s new Marihuana for Medical Purposes Regulations, which came into effect April 1.

Under the regulations, the strains of marijuana that producers can sell are no longer restricted, making it easier to find strains high in CBD, the chemical that treats Liam’s condition the best, but low in THC, a psychoactive component associated with pain relief.

However, licensed producers can only sell dried marijuana. They can’t sell any derivative products, such as oils or foods made with marijuana.

The McKnights receive a boxed shipment of 150 grams of dried marijuana from Bedrocan, one of 13 licensed marijuana producers in Canada, each month. Turning it into the oil that Liam consumes — about a quarter of a cup each day — is not a straightforward task.

“Health Canada says Liam has to smoke it or he has to vaporize it,” said McKnight. “Those are our two options, that’s it. So although they give him a license, the form of delivery is ridiculous.”

The major problem with vaporizing it, McKnight said, is managing the dosage. They want to build up the CBD in his system and keep him stable. With vapour it’s instantaneous, the effects are immediate and you can’t keep track of amount of CBD entering system the way you can with oil that has had its chemical contents analyzed in a lab.

So, instead, they ship the dry buds to the Montreal-based Medical Cannabis Access Society, where it is processed and extracted into coconut oil. Then, it is shipped back to them. McKnight sends a sample of the batch to a laboratory in British Columbia that analyzes the oil’s CBD and THC content so she can give Liam precise doses.

Technically, this process goes against Health Canada regulations.

It is expensive, too. Cannabis is $7.50 per gram. Extraction costs money; shipping costs money; lab work costs money. Liam also undergoes occupational, physical, speech and listening therapy. He has a live-in caregiver, along with the full-time nurse.

“Financially, it’s draining,” said McKnight. “If we were getting an extraction from a licensed producer, it wouldn’t cost nearly this much. I don’t even know how long we’re going to be able to sustain this.”

Adam Greenblatt, the executive director of the cannabis access society, said he believes that as many as 60 or 70 per cent of medical marijuana users would use derivative products if they could legally buy them.

“There’s a huge need for these derivative products in the patient population, a huge desire in this new medical marijuana economy to produce and sell and standardize them,” he said, adding there could even be special prescriptions for these products. “It’s up to Health Canada to get with the times.”

Apart from oils, these include hashish, baked products such as brownies, capsules and tinctures, which are liquid suspensions of cannabis in alcohol or glycerine. Not everyone can vaporize or smoke cannabis.

Greenblatt makes cannabis brownies for his own father, Michael Greenblatt, 65, who has suffered from multiple sclerosis for nearly 30 years and uses medical marijuana to help alleviate his systems. Because of the MS and asthma, his lungs are too weak to handle smoking or vaporizing marijuana.

Greenblatt helps the McKnight family, along with five or six others, to process dried cannabis into oils to treat Dravet syndrome. But he said there is a huge range of uses for products such as these.

Along with epilepsy and MS sufferers, a growing number of cancer patients use cannabis extracts as treatment. Children and elderly patients, especially, would benefit from an option that does not require inhaling smoke or vapour, Greenblatt said.

“It would be cheaper for producers to be able to make it themselves and sell it that way,” he said. “From an economic and business perspective, it makes sense.”

Isaac Oommen, who works at British Columbia’s Compassion Club Society, a cannabis advocacy organization, said that of their roughly 9,700 members, at least 30 per cent use derivative products such as edibles, oils or tinctures.

He said about 60 per cent of incoming members are patients over the age of 65, and among them, at least 80 or 90 per cent are interested in using those types of products.

In 2012, the B.C. Supreme Court ruled that people should be allowed to make their own oils, butters, baked goods and lotions using cannabis, and that designated producers should be able to provide patients with the same.

But the new regulations that came into effect in April mean the case is going back to court.

If the court ruling is found to still stand up under the new regulations, the government would be essentially forced to rewrite those rules, said Greenblatt. But, “These are expensive court battles when really they should just give up the fight,” he said.

For McKnight, who runs a Facebook page to raise awareness about Liam’s condition, it’s a matter of common sense.

“I really hope that somebody at Health Canada or somebody in this government just finally stands up and says, ‘OK, this is ridiculous. We need to help these kids.’”

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